Must health care be rationed? Medical schools and research centers frequently hold conferences on such questions as “Is rationing inevitable?” and many new books address the question posed by the philosopher John Kilner in his book Who Lives? Who Dies? The inquiries are usually of three kinds. One addresses the narrow issue of which patient should get the last available bed in the intensive care unit, or the single available donated, heart, or the only remaining respirator. The dilemma arises over whether to choose the candidate who is first in line, the youngest, the most prominent, or the richest, to name only some of the criteria that are now used.
A second kind of inquiry addresses the broader problem of what percentage of national resources should be devoted to health care as against, say, education, defense, or highway construction. The total amount of money spent by the government, insurance companies, and private citizens on medical care now amounts to about $700 billion. What social choices may have to be made if American medicine is to live within this already enormous budget? It is not unusual for commentators to confuse this question with the first.
The third question is to what degree health care can be distributed more equitably—not, as now, largely according to income, but according to need. With 35 million people uninsured, and almost as many underinsured, those with low incomes must settle for second-rate medical care, or none at all. According to George Lundberg, editor of the Journal of the American Medical Association, national health insurance, which the Journal long opposed, has taken on “an aura of inevitability.” But should American politicians finally vote for it, we can expect they will try to impose tight controls on its cost, which in turn might require rationing. Lundberg, for example, believes there will never be sufficient money or services to provide everyone with the care they may want.1
The use of the word “rationing” has helped, at least, to open up discussion of the social values implicit in any discussion of who will get effective treatment and who will not. In fact this may be why philosophers and other writers concerned with the moral implications of medical decisions—what is called bioethics—have become prominent in a debate that might otherwise have been monopolized by political scientists, economists, and health specialists. Two much-discussed cases suggest the central ethical issues that continue to be perplexing. The first occurred in the early 1960s in Seattle, Washington, when a committee of lay people was given the authority to decide which applicants should be able to use a kidney dialysis machine. The second is occurring right now in Oregon, where the state legislature is deciding the range of medical services that will be available to people who receive Medicaid.
In 1962, Dr. Belding Scribner of the University of Washington Medical School perfected an ingenious device to keep alive patients who would otherwise die from chronic kidney disease. They were connected to the machine by a shunt implanted in the arm between an artery and a vein; during six-to-eight-hour sessions three times a week, their blood circulated through artificial filters and was cleansed of virtually all impurities.
Initially, dialysis machines were in very short supply and the people who could benefit from them far outnumbered those who could be treated. To select among the applicants, that is, to decide who would live and who would die, the Seattle medical society and the hospital appointed a committee of seven citizens who had no special qualifications—the first group was composed of a lawyer, a minister, a housewife, a labor leader, a state official, a banker, and a surgeon. A medical team first screened the patients to see if they would benefit from dialysis and the committee then decided which of the remaining candidates would receive treatment.2
The committee’s deliberations were described in a Life magazine article by Shana Alexander. Having attended its meetings, she reported how members relied upon highly conventional standards. They chose married men with children over unmarried men and women, and over childless couples as well; they selected the employed over the unemployed. They rewarded “public service,” giving preference to community volunteers and churchgoers. They rejected out of hand anyone who was considered deviant, whether because of a mental disability or a criminal record.
This use of narrow middle-class standards to discriminate among patients provoked a great many reactions that were highly critical of the principles the committee had adopted. “What is meant by ‘public service’?” the authors of a UCLA Law Review article asked. “Were the persons who got themselves jailed in the South while working for civil rights doing a ‘public service’? What about working for the Anti-vivisection League?” With ample justification they concluded: “The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys.”3
In reaction to what had happened in Seattle, Indiana’s Senator Vance Hartke urged the Congress to enact federal legislation to underwrite the entire cost of dialysis for everyone who would need it. “Tens of billions of dollars,” he said, “are spent on…cosmetics to make us look pleasing, and on appliances to make our lives easier…. We can begin to set our national priorities through a national effort to bring kidney disease treatment within the reach of all those in need.” Henry Jackson, the senator from Washington, made an identical case: “I think it is a great tragedy, in a nation as affluent as ours, that we have to consciously make a decision as to the people who will live and the people who will die. We had a committee in Seattle…who had to pass judgment on who would live and who would die. I believe we can do better than that.”4
The result was a federal program that since 1973 has provided unlimited coverage to all persons suffering from life-threatening kidney disease. The current cost is $3 billion a year to treat 150,000 patients. Rather than address the question of rationing—the specific problem of who gets on the dialysis machine—Congress made an unlimited appropriation to treat kidney disease.
The conclusion shared by three specialists in bioethics who have recently published books on rationing is that the precedent of dialysis cannot, and should not, be followed. John Kilner, a philosopher at Asbury Theological Seminary in Kentucky, begins Who Lives? Who Dies? by discounting the “popular myth” that Americans have enough resources to underwrite the cost of treating every terminal disease. Practically all new medical technologies will at first be scarce, he writes, and therefore philosophers should try to state the principles that should guide rationing, at least for a limited period. Paul Menzel argues in Strong Medicine that there is an even broader but no less inescapable conflict between the well-being of the individual patient and what he describes as the social pressures for “economic efficiency.” A philosopher at Pacific Lutheran University, he never defines what he means by economic efficiency or who expresses its values, but he concludes nevertheless that:
Efficiency will sooner or later call for restricting care that would benefit individual patients. This is “hard efficiency”: it is surely not just the elimination of waste.
He wants doctors to meet the standards of financial efficiency, even if the result is “distasteful medicine to swallow.”
Daniel Callahan, a philosopher who is the director of the Hastings Center, is enthusiastic about the prospect of rationing. In What Kind of Life, he claims that “the financial crisis facing the healthcare system provides a superb, if probably painful, occasion to ask some basic questions once again about health and human life.”
The readiness of these writers to accept and promote rationing reflects a major shift in perspective among specialists in bioethics, many of whom said in the 1960s and 1970s that their primary goal was the protection of individual rights of patients against the paternalism of the physician or the state. Thus bioethicists such as Callahan led the movement to promote informed consent by patients, to force doctors to be truthful in giving a grim diagnosis, and to strengthen the patient’s right to refuse treatment in both private and public hospitals. To judge by the works under review, concerns about collective well-being have become more important than individual rights. Callahan insists that health care programs should be “fostering the common good and collective health of society, not the particularized good of individuals.”
But any attempt to justify rationing by such concepts of collective well-being is not only exceptionally difficult but has enormous potential for mischief. In a summary of practically all the different principles that experts have suggested for allocating scarce resources to one patient rather than another, Kilner mentions social worth (as with the Seattle committee), being a member of a favored group (nationals ought to receive benefits before foreigners), imminent death (the patient about to die should have priority over the very sick patient who has, say, a year to live), as well as age, the ability to pay, and, finally, the simple principle of first-come, first-served. Kilner rather mechanically outlines the justifications and weaknesses of each; it turns out that the standards most difficult to defend on ethical grounds are, in fact, often the ones most frequently used in day-to-day practice. One obvious example is ability to pay—patients die regularly because they cannot afford the transplant of a heart or lung.
The intrinsic merits of many of the other principles are harder to judge. Should American citizens be a favored group in distributing organs for transplantation? Kilner suggests a 10 percent quota for non-residents, trying to split the difference between citizens and non-citizens without suggesting any clear principle for doing so. And what of the practice common to transplant teams of putting patients who are about to die at the top of the list, even if they are the last to request help? Is it fair that the very sick, who may have been waiting for months, are made to wait still longer until their condition deteriorates and they are pushed to the top?
Kilner would give precedence to those facing imminent death and to those who use less of a scarce resource than others, so as to increase the number who can be treated. For example, a patient who needs dialysis once a week would take precedence over a patient who needs to be on a machine around the clock. He would also give precedence to those with “special responsibilities,” that is, physicians, scientists, politicians, business leaders, and parents with dependents, who were indispensable to their family or community. Although Kilner wants a committee to screen each application and make decisions case by case, we never learn who would appoint such a committee, what would be the source of its legal or moral authority, or how it would devise criteria that were as fair to a parent of young children as to a potential Nobel laureate. By giving preference to people with “special responsibilities,” Kilner revives the use of social criteria in medical decisions, with all its problems and biases.
Paul Menzel writes that “strong medicine does not always need to wait for people to sign on some dotted line to legitimize a cautious but courageous rationing of care,” particularly when obtaining the explicit consent of patients would be “impossible or prohibitively costly.” Instead, he assumes that individual patients have given consent to a rationing scheme if there is a strong social consensus that the action is legitimate. He takes as an example the practices of the British National Health Service in treating kidney disease. Having decided that dialysis brings only small benefits to patients over sixty-five, the British health authorities have restricted investment in dialysis centers and machines. British physicians simply inform elderly patients who need dialysis that nothing can be done for them. Menzel seems troubled that British doctors disguise the true reasons for the decision not to give treatment. He doggedly insists that such rationing has the patient’s prior consent. As a voter, he argues, the patient probably supported the government’s policy—at least before his kidneys failed—and in any case he or she supports the British system of parliamentary and cabinet government by which those decisions are made.
The doctor therefore not only should accept that prior consent has somehow been given, but he is obliged to respect it. Would the doctor “not be insulting him as an average British citizen proud of his NHS if she ignored scarcity criteria and got him on dialysis?” But why do doctors have to conceal the true situation if such a degree of prior agreement actually exists? The fact is that dissatisfaction with the health service has been growing in England, but quite aside from this Menzel has no reason for taking “prior consent” for granted in particular cases.
Menzel’s closing chapter, entitled “The Duty to Die Cheaply,” carries the principle of prior consent further. To forgo the use of scarce and expensive medical resources when one is terminally ill is not merely noble or heroic; “allowing oneself to die to save resources,” he writes, “can indeed be one’s moral duty,” a duty that he believes is socially enforceable—governments may force people to die cheaply. Menzel draws on the language of Christian, ethics in defending this proposition. Not to die cheaply is to pursue “our own vanity,” to make “idols out of ourselves,” to elevate egoism over communal obligations, and to reject the sovereignty of God over us. Fully persuaded of this, he tries to establish a connection between terminal illness and what he calls “quasi-terminal care”—treatments that will have limited benefits for people likely to die soon anyway. Since dialysis gives patients over sixty-five only a few more years of life, years that are going to be difficult and sometimes painful, in their case treatment should be withheld. Such care should also be withheld from patients who are “severely demented.”
Like low-benefit terminal care, life-extending care of the severely demented becomes a first-order candidate for restrictions if we take seriously the task of matching rationing policies with people’s actual values.
Why does Menzel believe that such policies would be widely acceptable? A “significant number” of patients themselves reject dialysis, he writes, and as for those with severe dementia, the conclusion is “virtually unquestionable.”
Menzel insists that “prior consent does not give a simple green light to any and all efficient policies,” but he never explains when the kind of utilitarian decision-making he evidently admires should be restricted. Since he presumes, on no evidence from real life, that the consensus he believes exists will always be fairly applied, he never even considers the possibility that minorities may need protection against majorities. He is willing to deny severely demented people treatment without pondering the implications of such a policy for the severely retarded or the chronic schizophrenic.5
The most ambitious argument for rationing comes from Daniel Callahan. His first book on rationing medicine, Setting Limits,6 addressed the narrower question of how much health care the aged should have. In What Kind of Life he takes up the question of how much health care Americans should be entitled to have.
Callahan contends that individual demand for health care is virtually boundless. People will pursue every technological fix to ward off disease and death, no matter how scarce or expensive. He repeatedly blames “liberal society” for not curbing “individual desires and needs,” but he provides no data to back up the claim that patients’ “needs, endless needs” bear the main responsibility for increasing the amount of medical treatment rather than, say, the policies of hospitals or the attitude of physicians. According to Callahan, we have forgotten that medical treatments are not an end but a means to an end—health should be restored not so that we will be healthy but so that we can fulfill other goals, social, intellectual, and personal. Failure to recognize this principle undercuts our ability to set limits on treatment at a time when mounting medical costs are swallowing up resources needed to meet other pressing social needs.
Making health care more efficient, or devising new formulas to contain the costs of hospitals and physicians, or more accurately assessing medical technology will not, Callahan believes, resolve our predicament. Since, in his view, the force inexorably driving up medical costs is personal demand for more and more treatment, none of these measures would curb it. The only solution is to impose limits on how much treatment a person will get. We should provide only as much health care as is necessary to maintain in good working order the political and legal system, the national defense, the pursuit of knowledge and culture, and the institutions, ranging from the family to philanthropic organizations, that hold society together. Rather than underwrite more medical research to produce more high-technology medicine, we should be investing in schools, industrial development, highways, parks, and recreation. After all, some exceptions aside, the
average level of individual and societal health is already adequate to meet the general needs…. Whatever the shortcomings of our social institutions, the poor health of their participants is not the cause.
And of the failings of American corporations Callahan asks: “Has anyone seriously suggested that poor health is the reason we no longer compete well with the Japanese?”
When it comes to the goals of medicine, Callahan would give precedence to care and prevention, not cure. Programs should serve first the chronic patient who requires social services (hospice, nursing, and institutional care), not the acutely ill patient who needs high technology diagnosis or treatment. He also emphasizes the value of preventive medicine and prenatal care, along with low-tech, low-cost, and effective measures, such as providing antibiotics and simple emergency medicine. These procedures address the “common threat to all,” and ensure the “adequate functioning of societal institutions.” What would Callahan eliminate? He would discourage treatment of infants weighing less than 500 grams, as well as dialysis, organ transplants, and artificial feeding and resuscitation of the elderly. Nor would he prescribe AZT for persons with AIDS. Callahan claims these expensive treatments merely solve “individualized problems” and yield a low quality of life for the patient and within the society as a whole.
Even if we grant that Callahan is right that billions of dollars are squandered in futile attempts to ward off death, the guidelines he suggests are grossly inadequate. Take his central principle: provide only that health care which the community requires to achieve stability and maintain order. In his earlier book, Setting Limits, he had a different argument. There he contended that the values people held were distracted by “modernism,” the “belief that human ingenuity can bring about a better future,…that nature is not fixed or normative in its ends but is malleable to human purposes and construction.” From this premise, he put forward a concept of a “natural life span”—when one’s possibilities in life have been realized—to indicate the moment when medicine “should be used not for the further extension of the life of the aged.” As some critics have pointed out, Callahan confused the “natural” with the ethically desirable, and attempted to impose a seemingly objective standard (a natural life span) onto an inevitably subjective judgment (a full and satisfying life): In his new book, Callahan speaks not of nature but of society, yet his notion of good social order is no more persuasive as a basis for rationing medicine than is the notion of “nature.”
In any case, Callahan’s assumption of a clear relation between health and social stability hardly seems warranted. No one has even shown that the many defects of American social institutions since the eighteenth century were caused by the poor health of our citizens. Even in developing countries where the case for preventive medicine is obvious, Callahan’s standard is of no help. In some of these countries—India is a good example—poor health is endemic and so is social disorder, but the two are not evidently related. In fact, in the name of good order, these countries prefer to devote almost all social resources to economic development, hoping that health care will improve as a byproduct of economic growth.
In the closing pages of Setting Limits Callahan suddenly informs the reader that everything he has said about rationing health care and restricting individual choice applies only to public programs. If people can pay for advanced technology and medical treatment directly or through private insurance, they can have all they want no matter how old they are. Thus Callahan’s elaborate arguments come down to a scheme legitimizing inequalities in health care based on wealth.
Conceding that his plan is “not too different from the system we now have in a crude form,” Callahan offers one central defense of it: by no longer paying for high-tech medicine such as kidney dialysis, the government would be able to extend insurance coverage to all Americans. The two-tier medical system he proposes would finally bring us national health insurance. But would the elderly and the poor, and their advocates, be content with so limited a range of treatment? Yes, says Callahan, if they understood that health care is not an end in itself, if they recognized the communitarian ideals that he, Callahan, believes in, and if they appreciated the need to contain costs. These principles would be able “to overcome the animus of many egalitarians against anything other than one-tier medicine.”
What Kind of Life is finally about what kind of life the poorer part of the population will have to accept. Callahan’s vision of good order is aimed at keeping the have-nots in their place, content with 1950s medicine, while the haves enjoy twenty-first-century medicine.
Unlike the bioethicists, most medical doctors writing about rationing base their suggestions on the traditional principle that each patient, however old or poor, should get the treatment he or she needs, whatever the cost. In a recent forum in the New England Journal of Medicine, Arnold Relman, its former editor, and Norman Levinsky, a Boston University doctor, insist that if the $700 billion expended in the US for health care were spent sensibly, rationing would be unnecessary.7 Relman contends that if technology were properly evaluated and used only when “medically indicated,” costs would be controlled. He believes that much treatment is not really necessary (do US patients actually require three times as much open-heart surgery as Canadian patients?) and that too many expensive tests are being made (do American hospitals truly need eight times as many imaging machines as Canadian hospitals?). “All the evidence suggests,” he finds, “that there are vast savings to be made through the elimination of unnecessary services and facilities.” Certainly Relman’s charges deserve intensive inquiry to determine just how frequent are the excesses he writes about and what could be done to avoid them.
Levinsky also is “not persuaded that explicit rationing is necessary in the United States at this time.” He is confident that eventually medical research will somehow find reasonably priced ways to cure disease and improve quality of life. To support the claim, he notes that the cost of preventing and treating smallpox has been eliminated and that tuberculosis sanitariums have closed. Whatever the limitations of his argument—neither smallpox nor tuberculosis is a useful example for calculating the future costs of chronic disease in the elderly—Levinsky finds the alternative, to sanction “the ethos of death as a communal act,” unacceptable in “the wealthiest country in history.”
Both writers would like to see the medical profession itself lead the country out of the morass that it helped create in the first place. Just who in the profession could or should provide such leadership they do not say. Nor do they acknowledge as strongly as they might that many people, with some reason, see doctors as egotistical, highhanded people who are too concerned with collecting fees and insufficiently sensitive to the needs of patients. It seems highly unlikely that physicians will be granted the discretionary authority to set policy on which tests and which treatment will be withheld, as Relman and Levinsky recommend.
One of the more determined efforts by a physician to establish guidelines for medical ethics is Troyen Brennan’s Just Doctoring. Unlike many of his colleagues, he concedes the need for rationing, writing that “there must be limits on the resources that we as a society put into health care.” Yet he does not want physicians unilaterally deciding which lives should be saved and which should not. Rather: “Physician decisions must be made within guidelines developed by a broad social consensus,” and they should help “cost controls work in the best possible manner.”
Unfortunately, Brennan says little about how that social consensus might be achieved. He does not want doctors to mislead patients as British doctors frequently do. Unlike Callahan, he does not want rationing to be arbitrary—not all eighty-year-olds are alike. Nor should rationing be uneven in its social effects—no one should be allowed to have special treatment because he is rich. He rightly worries that ability to pay will become the dominant principle and that “the poor will likely bear the brunt of rationing.” He hopes that physicians will somehow be able to prevent inequality in rationing, but Oregon’s well-publicized venture provides an example of just how tenuous such expectations can be.
In July 1989, at the urging of Dr. John Kitzhaber, president of the Oregon Senate and a former emergency room physician, the state legislature enacted a Basic Health Services Act that would expand the number of people eligible for Medicaid coverage but limit the benefits they might receive in order to keep state expenditures constant. A state health-services commission, dominated by health professionals, was asked to rank all medical services by their importance, taking into account criteria such as “public values,” “relative costs, benefits,” and the quality of life after treatment. According to the plan, an actuarial group was then to calculate the cost of each service, and the legislature would make a lump sum appropriation. Each person receiving Medicaid would be eligible to receive a group of benefits that went as far down the list of services as the state appropriation would allow.8
After one false start, in which treatment for thumb sucking and low-back pain far outranked operations for appendicitis, the health services commission devised a three-tier system—“Essential Services,” “Very Important Services,” and “Services Valuable to Certain Individuals”—and then ranked treatments within each category. The most important of the essential services were treatments for acute and fatal conditions which promised full recovery (repair of open neck wounds, treatment for coronary blockages). Next came maternal care, preventive care for children, contraceptive services, comfort care, and preventive services for adults. The “very important” services ranged from the treatment of acute and nonfatal conditions (filling dental cavities) to chronic nonfatal diseases (sinusitis, migraine headaches, psoriasis). The bottom tier included services that would help people to recover from acute and nonfatal conditions (diaper rash, conjunctivitis), infertility services (in vitro fertilization), and, finally, treatments which had minimal or no proven ability to improve the “quality of well-being” (therapies for viral warts).9
Oregon has not yet carried out the program. Even when the costs of each treatment are calculated and the legislature makes its appropriation, the state will still have to obtain a waiver from the federal government to change the list of services that Medicaid must provide, and it is by no means certain that such a waiver will be forthcoming.
Editorial writers throughout the country have praised Oregon’s plan. It is thought to be doing something admirable by taking the thousands of dollars that would otherwise bring doubtful benefits to a handful of patients (such as in vitro fertilization) and allocating that money to programs certain to promote the welfare of large groups (like prenatal care). Daniel Callahan predictably considers it a “bold and integrated” plan and Troyen Brennan finds it “rational.” Since the rankings of medical services were the subject of public discussion, the consensus was said to be democratically achieved. Because coverage would be extended to over 100,000 people lacking insurance, the program was said to be equitable.
But the Oregon venture makes apparent how treacherous are the politics of rationing. The plan affects only the Medicaid population—only the poor therefore bear the burden of the cutbacks and they, in reality, subsidize the extension of medical coverage to other poor people. Moreover, the plan does not affect the entire Medicaid population: it exempts all services, social and medical, for the elderly, which amount to well over half the Medicaid budget. The officials who presented the plan said that social services are too difficult to rank; more likely, nursing home operators and the elderly are constituencies too powerful for the legislature to penalize. Nor did Oregon extend its policy to the state insurance program that covers its own employees, and it specifically prohibited any cutbacks in payment for hospitals and physicians. Thus, the one target is low-income women and their children. Oregon’s Basic Health Services Act seems less a brave adventure than the kind of rationing limited to recipients of public aid envisioned by Callahan.
In view of such deep prejudices against making available to the poor the medical treatment most people would want, are we left to choose between inequity and insolvency? I see no reason for optimism in a society where indifference toward the less well-off is taken for granted; but some changes in perception may be taking place. The apocalyptic literature on rationing presupposes an insatiable demand of individual patients for high-tech medicine. But if such books as Philip Roth’s Patrimony and Andrew Malcolm’s Someday and the spectacular popularity of a book on suicide, Final Exit, are any sign, middle-class consumers of medical care may have become more willing to accept limits on how much can be done. This reflects not a recognition of a duty to die cheaply but an unwillingness to prolong the dying process needlessly. There may now be fewer guilt-ridden families who insist that their parents spend their last days miserably in an intensive-care unit at a cost of $50,000 or more.
Roth and Malcolm describe how they decided that “everything” should not be done to postpone the inevitable. Herman Roth, the author’s eighty-six-year-old father, had a non-malignant tumor pressing against the brain stem that could have been excised by surgery. Although the operation has a 75 percent survival rate (and undoubtedly would have been paid for by Medicare), it requires, depending on which surgeon you talk to, either one eight-to-ten-hour operation or two seven-to-eight-hour operations several months apart; the recovery period takes another several months, and Mr. Roth would have to learn how to walk again. The surgeons who saw him were certainly ready to do the operation, and they were confident Herman Roth would be worse off if he didn’t have it—a standard argument of surgeons eager to perform debatable operations. But Herman Roth, with his family’s agreement, did not want it. The son had his father sign a living will, refusing “mechanical respiration when I am no longer able to sustain my own breathing.” Yet the end was a trial:
Early on the morning of his death, when I arrived at the hospital emergency room…I was confronted by an attending physician prepared to take “extraordinary measures” and to put him on a breathing machine. Without it there was no hope, though, needless to say—the doctor added—the machine wasn’t going to reverse the progress of the tumor…. And I, who had explained to my father the provisions of the living will and got him to sign it, didn’t know what to do…. How could I take it on myself to decide that my father should be finished with life, life which is ours to know just once? Far from invoking the living will, I was nearly on the verge of ignoring it and saying, “Anything! Anything!”
Andrew Malcolm, whose mother was suffering from lung cancer, had much the same experience, and he and Roth use almost the same language when they describe the decision to “let” their parents “go.” The choice they made is becoming more frequent all the time. It has nothing to do with budgets or with concern for the commonweal, but with a recognition of futility, a desire to prevent pain, and an acceptance of the inevitable. Still, since 10 percent of health-care dollars are now spent on elderly people in their last year of life, considerable savings would result if many more people made similar decisions.
Although drawing conclusions about social trends from best-seller lists can be treacherous, the sale of approximately 500,000 copies of Derek Humphry’s Final Exit reflects more than the considerable marketing skills of Carol Publishing. While Callahan worries that people want too much medicine, the many people buying this book seem afraid that they will be forced to accept more medicine than they want. The text itself is repetitious and sometimes reads like a promotion for the author’s organization, the Hemlock Society. Nor does the book quite live up to its offer of a manual for “self-deliverance.” But if one believes that doctors and hospitals will go too far in caring for the terminally ill, either from fear of legal consequences or from a misconceived mission to give treatment at all costs, or that a person’s autonomy includes the right to decide when life is not worth living, then Final Exit is a straightforward and practical guide. It is much clearer than Humphry’s earlier book, Let Me Die Before I Wake (reissued in February by Dell Publishing), which intersperses accounts of people who took their own lives with details about the drugs they used.
Final Exit never degenerates into a parody of itself, although the chapter on “bizarre ways to die” comes close, dealing as it does with electrocution (one has to be a trained engineer to use it effectively), guns (messy and lonely), and charcoal fires (much too uncertain and dangerous to others). Humphry insists that death should be dignified—it should take place at home, near loved ones—and be sensitive to the feelings of others. Write a note, Humphry advises, and “do not surprise or shock” the family. The book is especially alert to legal implications, whether of insurance policies (which may carry a two-year exclusion clause for suicide) or possible criminal liability for those who assist in the suicide.
Perhaps its most important message, however, is that the use of non-prescription drugs is “a prescription for disaster.” A “good death” requires prescription drugs, which means that either you dupe the doctor into writing a prescription for barbiturates (Humphry suggests what to say to him), or you find a cooperative doctor. Indeed, one underlying purpose of this book may be to persuade physicians that helping people to commit suicide should be a legitimate part of their practice. The chapter on correct dosages is written for them, not lay people, and reads more like the Merck Manual than Consumer Reports.
The books of Roth, Malcolm, and Humphry suggest that more and more people are finding medical intervention less acceptable than a quiet death. The choices we make consistent with this lesson will not provide a comprehensive solution to allocating resources for health care. Nor will they break the deadlock over national health insurance, which, after decades of being ignored, is beginning to receive the urgent attention that it deserves. Still, it seems preferable, at least for now, to rely upon modest hopes to curtail expenditures and to try to make access to medicine more democratic. The discrimination that the poor suffer in health care should not become the excuse for putting into effect clumsy and ill-conceived rationing schemes. Their consequences may well turn out to be more grievous than the inequalities they aim to resolve.
March 5, 1992
“National Health Care Reform: An Aura of Inevitability is Upon Us,” Journal of the American Medical Association, Vol. 265 (May 15, 1991), pp. 2,566–2,567. ↩
The first lifesaving medical machine was actually the iron lung, but the relative ease of manufacture and the extraordinary fund-raising efforts of the National Foundation for Infantile Paralysis made it unnecessary to ration the use of the machine. ↩
David Sanders and Jessie Dukeminier, “Medical Advance and Legal Lag: Hemiodyalysis and Kidney Transplantation,” UCLA Law Review, Vol. 15 (1968), pp. 357–413; Renee C. Fox and Judith P. Swazey, The Courage to Fail (University of Chicago Press, 1974), Chapter 8. ↩
Congressional Record, September 30, 1972, pp. 33,004–33,008. ↩
I do not want to leave the impression that bioethicists are all in agreement about rationing. Samuel Gorovitz’s recent account of the seven weeks he spent at Boston’s Beth Israel Hospital (Drawing the Line, Oxford University Press, 1991) includes a passing reference to rationing that underlines the problems raised by Menzel’s approach. Gorovitz notes that addressing questions about how to ration can become a “destructive” exercise, “for to answer them at all, even on the most tentative basis, is to devalue entire categories of people.” He concedes that in the future we might be compelled to address these questions, but “until we are unable to avoid them, it may be best to keep on trying.” ↩
Simon and Schuster, 1987. Reviewed here in the April 28, 1988, issue by the late Sidney Hook. ↩
“Is Rationing Inevitable?” New England Journal of Medicine, Vol. 322 (June 21, 1990), pp. 1,808–1,816. ↩
Daniel M. Fox and Howard M. Leichter, “Rationing Care in Oregon: The New Accountability,” and Lawrence D. Brown, “The National Politics of Oregon’s Rationing Plan,” Health Affairs, Summer 1991, pp. 7–51. ↩
Charles J. Dougherty, “Setting Health Care Priorities: Oregon’s Next Steps,” Hastings Center Report, Vol. 21 (May–June 1991), conference report, pp. 1–10. ↩